In this moving episode, we explore what it truly feels like to live with dementia — not just memory loss, but confusion, anxiety, mood changes, and altered perception .

Through a powerful Alice in Wonderland metaphor, viewers are guided inside the disorienting world of Alzheimer’s disease — where memories fade, reasoning is impaired, and reality can feel uncertain .

Unlike the storybook Alice, individuals living with dementia do not simply “wake up.” Their experience is ongoing — and deeply human .

What You’ll Learn:

1. How dementia affects daily functioning
2. Why behaviors are often rooted in fear and confusion
3. The importance of person-centered care
4. How empathy transforms caregiving

This episode reminds us that understanding their world changes how we respond in ours.

https://www.mindingdementiasummit.com/

About the Host:

Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.

Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Lisa’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle so they can have a better-quality relationship with their loved ones through education and through her workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.

So many people today are heavily impacted by Alzheimer's disease and related dementia. The Alzheimer's Association and the World Health Organization have projected that the number of people who will develop Alzheimer's disease by the year 2050 worldwide will triple if a treatment or cure is not found. Society is not prepared to care for the projected increase of people who will develop this devastating disease. In her 30 years of working with family members and caregivers who suffer from dementia, Lisa has recognized how little people really understand the complexities of what living with this disease is really like. For Lisa, it starts with knowledge, education, and training.

Thanks for listening!

Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page.

Do you have some feedback or questions about this episode? Leave a comment in the section below!

Subscribe to the podcast

If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can also subscribe in your favorite podcast app.

Leave us an Apple Podcasts review

Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts.

Welcome back everybody. I'm Lisa Skinner,

your host. I have something really, really special planned

for everybody today, and I'm really excited about it. I'm

doing something a little different. I wrote a script and

a PowerPoint presentation that really helps people understand

what it's truly, truly like for people who live with Alzheimer's

disease and dementia. So that is what I'm presenting for you

today, and I hope you really love it. I'm very proud of this

presentation. So without further ado, we will get started. The

name of this PowerPoint presentation is called, through

your eyes. Today, I'm going to unveil the complex realities of

the true world that people who have Alzheimer's disease and

dementia really live in, from their perspective, going beyond

common misconceptions about memory loss and confusion. So

welcome to this presentation. So please join me as I guide you

through a glimpse into the unique world of individuals

living with Alzheimer's disease and dementia. Alzheimer's

disease and related dementia, as we all know, affect more than

just memory. It also impacts a variety of cognitive abilities

in many complex ways. And even though millions of people

worldwide are currently affected by one of the over 100 to 200

brain diseases that cause dementia, it remains one of the

most misunderstood and feared disorders today. This is a fact.

It's true. Therefore, I want to illustrate how individuals

living with Alzheimer's disease and dementia realistically

perceive their worlds to enable others to grasp a better

understanding of life from their perspective. I'm going to try to

accomplish this for you by drawing parallels to one of our

all time favorite childhood stories. I hope everybody

recognizes the title, it's Alice in Wonderland. Now I did this

for a couple reasons, one, because I have recognized so

many similarities between the whimsical journey that Alice

takes through Wonderland and the journey that people are living

with dementia are actually on and two, because it's a story

that almost every one of us can relate to. From today's

presentation, my goal is for you to take away a deeper

understanding of how brain diseases like Alzheimer's

ultimately undermine a person's ability to function effectively

in their daily lives, how loved ones and caregivers can

resourcefully navigate the daunting challenges that will

inevitably accompany them on Their journey, how this

knowledge may influence your understanding of the importance

of a person centered approach to dementia care, and how to tailor

that approach to the needs and preferences of each and every

individual who lives with dementia in order to

considerably enhance their overall quality of life and

sense of dignity. Also, I want you to leave with a new

awareness that an altered reality of individuals living

with Alzheimer's and dementia can cultivate greater empathy

and understanding towards their behaviors and their lack of

ability to effectively communicate with us. It would

only take me about five minutes to get to my grandmother's house

on Cedar Lane. She lived so close to me while I was growing

up that I got to see her all the time now I remember her as being

a shy and soft spoken woman, and I truly adored my grandma. Then

everything changed. When I turned 16, she suddenly went

from being sweet and charming to being fearful. Fearful, anxious

and suspicious of everything. I will never forget this one

particular visit, she told me that birds were living in her

mattress, and that they would come out at night and peck at

her face, that rats by the hundreds were invading her home,

and that those people were breaking in to steal her jewelry

and eating all of her food. She told me they're only leaving me

scraps of bread to eat. She was absolutely convinced they were

there to harm her. Well, little did I know then that this was

the beginning of a 20 year journey with Alzheimer's disease

for my family, with seven more of my family members following

her, it was also the beginning of my own journey to help others

who live, whose lives have been or will be unnerved by it. So

come along with me now with an open mind as Alice's new journey

into Wonderland begins, and keep in mind that my Alice does live

with dementia, so in the same fashion as the original Alice in

Wonderland, begins my story also starts off with Alice sitting

under a tree listening to her caregiver reading her story.

However, my Alice didn't recognize this story at all, so

she anxiously began looking around out of the corner of her

eye, believing that what she was looking at was a huge white

rabbit dressed in a suit purring by. So she got up and decided to

follow Him. Now, Alice followed the White Rabbit for what seemed

to be an eternity, and then right down a rabbit hole she

went. Alice found herself in a strange room realizing how truly

lost she was, but she couldn't remember who she was or how to

get back to any familiar place. She looked around for a way out

when she noticed a strange bottle sitting on top of a table

that said, Drink Me. So you remember in the story, she did,

then she immediately began to shrink smaller and smaller she

became, but now she realized she'd be able to fit through

that little door that she saw the white rabbit disappear

through. Well she thought, at least now she might be able to

find him. He was her only hope of getting back to where she

came from. Throughout her search, at times, she thought

she saw the white rabbit beckoning her to follow him into

the unknown, which gave her the courage to keep on as she

continued her quest to find the rabbit, she suddenly found

herself entering a garden of live, talking flowers. Those

flowers immediately demanded that Alice leave their beautiful

garden, insisting that she was a weed out to destroy them. So she

skedaddled out of there as fast as she could before she angered

them any further, reflecting her own dementia generated paranoia,

this very scene illustrates how individuals with dementia, may

experience irrational fears and misinterpret their surroundings,

leading to anxiety and confusion.

Well, soon she came upon a talking Caterpillar sitting atop

a mushroom, smoking a hookah and blowing smoke rings that formed

words she didn't understand, and just like in her dementia,

sometimes her memories would also seem to float, just like

those smoky words, only to vanish Into Thin Air when she

tried to grasp at them. Now, which way should I go? Alice

thought to herself, well, at this point in her journey, she

was clueless as to which way she should turn. So she continued

along the same path. And then out of nowhere, she suddenly

heard a voice say, Well, if I were looking for a white rabbit,

I'd ask the Mad Hatter. She looked all around, but she saw

nothing. She looked up and sitting high in a tree was an

extraordinary looking cat with a grin on its face that stretched

from ear to ear. He went that way, the cat told her, pointing

down the path. So she followed in that direction. Then the cat

just disappeared, symbolizing the elusive nature of her own

thoughts and recollections. Finally, she came upon that Mad

Hatter with his nonsensical riddles, scattered thoughts and

disjointed speech. And there she found the White Rabbit and the

March Hare too. But it wasn't long before she began to feel

anxious and wanted to leave that peculiar party. They were all

celebrating their unbirthdays. Now she desperately wanted to go

home, but nobody at the party seemed to know the right way for

her to get there. As a matter of fact, they insisted that she

already was home next Alice wandered into the Queen of

Hearts' garden. She seemed friendly at first, and even

invited her to play a friendly game of croquet, but Alice

politely decline. Well, this infuriated the queen. She

started yelling Off with her head off with everyone's head.

Oh no, there she went again, running away as fast as she

could, only this time with an army of playing cards in fast

pursuit of her. Now, if you all remember, this is the part of

the original Alice in Wonderland story where she suddenly wakes

up from what turned out to be a dream, but a very frightening

dream, she was so relieved to find herself back in the place

she started sitting with her sister listening to that story,

sipping on a warm cup of tea. Now, Alice's experience in my

story with the Queen of Hearts illustrates how mood swings,

misunderstandings and misperceptions can occur so

innocently and without any warning when you live with

dementia. The biggest difference between the real Alice in

Wonderland and my Alice who is living with dementia, is that

the real Alice did eventually wake up from what was a

terrifying dream. My Alice, the Alice, living with dementia, she

won't be waking up from a dream because she's not dreaming. This

is her new world. It's her new permanent reality. She is now

living in a world filled with uncertainty and things that make

no sense at all because her mind is no longer able to separate

fact from fiction. It's a new world where a person becomes

convinced that people are out to harm them, because when you live

with dementia, you live with impaired reasoning. And it's a

world where a person with dementia can easily become

disoriented to place and time, and may even believe that they

are living in a different timeline of their life. In the

past, families of individuals with Alzheimer's disease and

related dementia had limited resources and little

understanding of this condition, the early coping strategies were

often reactive rather than proactive. In the later half of

the 20th century, we saw significant advancements in the

understanding of dementia. So one of the key principles in

modern Dementia Care is the concept the methodology of a

person centered approach to dementia care. As our

understanding of dementia continues to evolve, the

continued emphasis on a person centered approach to dementia

care and in. The recognition of the emotional and psychological

needs of people living with dementia continues to expand. We

will continue to strengthen our understanding of the unique

world in which they live. However, continued research and

education will be crucial in harnessing empathy and in

improving the lives of those affected by Alzheimer's disease

and related dementia. So this is my story. This is my special

presentation. Thank you so much everybody for spending part of

your day with me, and I hope you enjoyed my version of Alice in

Wonderland living with dementia. And as a reminder, please stop

by and visit our newly updated website at minding dementia.com

There's new resources and information that hopefully will

be helpful for everybody who is living in this world. I'll be

back next week. Have a wonderful rest of your week. Be happy,

stay healthy, and I'll see you all next bye, bye for now.